SCS coverage
 

Hi all,

I was wondering if anyone has had problems with the SCS not covering where it is suppose to or not covering as much area as it's suppose to. I have had the implant now for about 9 weeks and am discovering that it is not covering my feet or the middle of my lower back. However, it is covering the front and back of my upper and lower legs as well as my rear end and hips, but I still have pain in my mid lower back and feet. I've also found that the stimulation seems to favor my left side. I was just at a 'tweeking' session yesterday and had the best coverage to date but when I woke up this morning and turned it on it was covering mostly my left side. I don't know if I'm still in 'recovery' mode or if this is how it's going to be. I'm also confused because I had the paddle implanted so the leads would stay in place so I could live a more active life. I guess I'm not sure if it's the leads that are not working correctly, if my body's not working correctly, if the leads were placed incorreclty, or if I just need to be patient and give my body more time to heal. I still have a lot of surgery pain but because I don't handle pain medication well am limited to what I can take. Although, my doc did up my baclofen so I'm hoping that will help with the muscle spasms.

I appreciate all your input. Thanks!!

Praying and Pulling for you
 

Hey KZL- I am praying and pulling for you that the pain control resolves! I am pretty close to my own Trial, I think, and I also want a more active life!

Here's hope,
Mark56 :hug:

I think we share the same boat.......
 

Sort of........:Sinking:

Several of the things you've mentioned are similar to what I am facing.....
We had our implants in the same timeframe...... your surgery was wayyyyy more involved however, so no doubt you've got a way to go as far as the healing..........
But.....:Ponder: I'm trying to remember if you had the stimulation in the area at first and now it seems to be 'fading'...?
How many programs do you have?

I still have yet to get to my first tweek session (Apr 26), but several of the things you've brought up are similar.....such as the left side being favored....

What throws me for a loop tho, is that you just came home from a re-programming session and were happy with it, then wake up the next morning with the changes? That's strange.
Since our surgeries were so different, it's hard to compare.....

As of now, I am only using 1 out of the 3 programs I originally had. The other 2 programs create this very uncomfortable 'grabbing/pulling' sensation in my back near the incision where the leads are. I have found that this may be due to the fact that those 2 programs may be using shared electrodes, which is like setting up a program as a 2 in 1 sorta thing.
Some programs are set up to 'cross-talk' or they may be individually....
Also, I'm going to ask if my dual leads were 'staggered', because this, supposedly can cover more area.......
I'm basing this info from a friend via Email who is giving me input. Those stupid little 'handbooks' they give us do not say much more than what common sense would tell us, so at least this friend of mine is giving me input that will aid me in the questions I will be asking...

Also, as I was 'experimenting' around with my programmer, I realized that certain programs cover an area in a certain way, and then if I would lie down, the coverage would change dramatically.
I guess that's why they create the different programs for our different activities during the day/nite.
So, while you were at your programming session, did he have you lie down/stand up/sit down/ to program the leads according to your different positions? I'm hoping that's all it is in your case, that you woke up lying down with a program on that he set as you were in a standing position....

Good Gravy.....this sounds like a tossed salad with a micophone! :o
I hope I haven't caused you more confusion.

I'll check back soon and we can compare notes k!

Your Friend
Rae
:hug:

Also forgot to ask:

Did he say that 'scar tissue' could have anything to do with the changes in coverage? As the scar tissue grows and shapes, it may be possible to move the leads a bit? Maybe ?

Good Lord it's late........ nite nite.......:Zzzz:

Hi all-Funny I was going to post about my re-programing today and here you all are!. Those who know me know I am going on 2 years with my SCS. Mine is also the lamenectomy type. I had not been doing too well the past 4-6 weeks and due for regular PM appt,the Medtronic Rep met me and OH BOY did I need 'Tweeking"
SO-always remember that pain patterns change and do not hesitate to ask for a reprograming!!! I feel tons better and will never go this long again. I do not even use the initial programs anymore and this is probably the 6-8th. time I have been reprogramed. So use that SCS to its fullest potential. Hope this helps-Fondly-Carol

Thank you Carol !
 

SOOO glad to 'see' you !! :hug:
WOW 2 years! I hadn't realized time has flown and you are at your 2 year mark.
You give PERFECT input ! Makes me realize how they say.....sometimes the obvious is right in front of us!
And in your case (I'll be exactly like this!) I bet it was just a very small amount of change going on over a period of time and we don't 'see' it happening.....?

:Clever: Well, geee wiz, doesn't that sound logical..... :cool:

I'm glad the 'tweeking' did you good :)
Reading your post makes me realize all the more how important it is to be able to communicate well with our Reps. Communication is KEY. And that's why we need this forum so much! We 'remind' each other of the 'obvious' things.....:hug:

I'm in a flowery mood today.......:circlelove: not even sure why to be honest.

I just Luv you guys........ :grouphug: :p

Hi Rrae-Good to talk to you again. I am going to try to use this SCS forum more often-seems like maybe I can help a bit here. I am pretty good today and wish you well-Fondly-Carol

Well heck Yaaaa!
 

Of COURSE you'll be of much help here!!
Folks come here every day looking for input, experiences, advice........

Please stick around! :grouphug: Glad to know you are doing well !!

It's always inspiring! There are several here who are going thru some 'trying' times with their units...... :( Any input you can give would be much appreciated!

I got my stim for my foot and if I don't turn up the intensity I do not feel it in my foot. When I turn it up real high I then get it in my foot. I do not get any sensation on my spine of my low back but do get both sides of my back. I have mine set to were I can turn the intensity of my back down and foot up if needed. I am suppose to meet again for another tweek session to try and get spinal coverage. I let you know if it helps. Maybe than can tweek yours and figure it out. Hope you can get the coverage you need.

Well, I went back to see my doc on Thursday for another 'tweeking' session. We seemed to find even better coverage than Monday but when I woke up on Friday it seemed to favor my left side again. My doc and I looked at my x-ray that I had a few weeks ago, and it looked like everything is placed in the middle of my back so it's not like the paddle is "off center". My doc didn't really give me much of a reasoning as to why it favored the left side other than not everyone is symmetrical and that we are starting to touch the tip of the iceberg with finding the right program....that there are so many possiblities that we haven't even explored yet with the SCS. I guess I just need to be more patient. I think my doc does an excellent job in taking the time to find the right programs. Everytime I've needed to get a 'tweeking', she's spent at least an hour (if not longer) with me trying to find a program that has the best coverage. We've tried the programs while I'm sitting, standing, and laying down but it never seems to hold. I don't think she's worried about the scar tissue anymore (the paddle is secured quite tightly) because she gave me to go ahead to start golfing if I wanted. (I wish I was up to that but the surgery pain is still bothering me quite a bit.) It's just getting a little frustrating that I can't seem to find the right program yet. I've been adjusted 5 times and it hasn't even been 10 weeks since the implant. I'm also really disappointed that one of my meds was increased, too. Ugh! I just need to stop feeling sorry for myself!! I'm not going to settle until I have the coverage I need so I just need to keep my head up and move forward! I did not go through all this to quit now!

I also wanted to tell you all how much I really love this place! I always feel so much better after getting my feelings out and knowing that people have had similar experiences doesn't make me feel so alone. I love my family and friends to pieces and they do the best to relate and support me but until you walk in the shoes of someone else, it's not the same. All of you are so incredibly AWESOME!!! I so appreciate your thoughts, comments, and support!

:You-Rock: Thank you!!!

Thank you for SHARING
 

You are all helping me understand the full range of possibilities, realities, and need for clear continuous communication regarding the process and healing from SCS, and I THANK YOU! :D Waiting on my end for the go ahead scheduling call that means insurance and docs have cleared the way for my implant. Golfing? KZL, really? Wow, if you can overcome the surgical pain that would be just too cool. Gosh, if clearance to golf with its twisting swings can happen for you, well, really, it seems dancing with my wife or skiing for that matter might not be off the recovery road map.

Among my hopes, dreams, goals is dancing [skiing, well, I will leave that one for the docs to allow or restrict], reducing the opiates, returning from Never Never Land and resuming work if that is a reality. I have so much hope!! The lot of you help me find and touch it. It feels good.

Hugs all around, :grouphug:
Mark56

I was really surprised when she (my doc) said I could start golfing, too. I was anticipating not at all this year. From day one she was telling me she saw no reason why I could NOT do the things I did before.....maybe not to the extreme that I was doing it though. (My husband and I would golf anywhere from 36 to 45+ holes on some days and if it were the weekend, we'd get up and do it again the next day.) Now, I decided to have the paddle implanted so I could be more active. I'm not so certain she would have said I could if it were just the leads that were implanted. She is a firm believer in not letting pain control her patients lives so she really is a great supporter of helping you gain that control back. My advice to anyone looking for a surgeon is to find one who has the same ultimate goal as you do so you both are on the same page. She takes her time for all the questions and 'tweeking' sessions I need. She truly is a patient advocate which I think is rare these days to find in a doctor/surgeon.

One thing I do know is that I am so tired of letting this thing called pain take control of my life!! Obviously, I am not going to go and golf like a crazy women but dang it, I WILL start golfing again by the end of the summer!!!! Even if it is only 9 holes. I am ready to live again!! I am only 37 years old and have a lifetime ahead of me. I will NOT accept a life of pain and watching from the sidelines! I WILL participate and live a full life!! And God willing I will have all of you right beside me participating and making a full life for yourselves! :Heart:

Tryin this again
 

Hey KZL- I am so glad you have that clearance to go for the golf.... just don't overdo. Trouble I had post lumbar surgery was the temptation to overdo and it tended to take me down. Gosh, if you can golf, then I may be able to really get to the dance floor with my wife. I would love the other stuff too, like skiing, hiking, biking, but baby steps are OK with me. I want this to work!!

I, uh, tried saying essentially the same thing the other day, but it seemed to go into the nether never to be seen again. Maybe sun spots. But this message is essentially the same one as before.

Enjoy those rounds! Fore!
Mark56 :) :trampoline:

no sun spots here!
 

hello Mark

the only way you can lose a post here is either if you time out (which can be avoided by checking "remember me" when you log in
or
if you did not click the submit button when trying to post. this sometimes happens if members use the Preview Post button and then forget to go further by clicking Submit

if any post is ever removed by a moderator, you would be PMd about it. No posts are ever totally deleted, and they have to be moved by the mods to the admin forum so we have a record there. There is no post by you there.

hope that may provide an answer to your mystery of a missing post.

Thank you Chemar
 

I appreciate your post Chemar, and, maybe I goofed somehow. But I had about three posts this week which, when I clicked submit, went the way of my posts I guess, followed by the post will not appear until approved by a moderator message. Kind of a mystery, but I figure just one of those things. Anyway, I see my follow on post to this thread made it! Thank you all for helping make this a valuable and useful place for all of us folk.

Much thanks,
Mark56 :)

Good news- hang in with it
 

kxlrogue-

yes - you are "way in" recovery mode.

This is my first reply to anything on any internet site-so am not certain about formatting, etiquette, etc. Been dealing with SCS for 5 years, and in addition to my strongest, strongest recommendation to have any scs implant done by a neurosurgeon who has this as the core or at least a focal part of his or her practice; I would suggest that you get acquainted with the manufacturer's rep, or whoever is the designated person from ANS, Medtronics, etc. who does programming of implants for users. For ANS, the person selling gear to the hospital/surgeon is that individual. My Rep is a young guy who has hung in with me thru a whole bunch of drama, and along with the surgeon who did the implant, is responsible for "giving me my life back, altho because of brain damage the seems to have come out of an initial implantation from a surgeon not meeting my 1st recommendation: so I should rephrase it "getting part of my life back". That however has nothing to do with the gear as far as I know.

My experience has been that as long as I feel stimulation and am getting any kind of relief, I am more than likely ok, and sometimes even when this is not the case.

1st, give your mind and body and spiritual person as much time and rest as possible. My son is a surgeon, not neuro, and he told me that healing at my age, circa 60, would take a year. After the initial healing period of 3 to 4 months, it took me a full year to catch on to just how to use the thing and to recognize when to ask Chad (the rep) for a tune-up. I've gone from a high of 175 mcg. fentanyl/48 hours and 24 mg of hydromorphone to 50 mcg. fentanyl and 20 mcg. of hydromorphone.

I have regained some thankfulness for life. I wince to write that, but for you folks who have lived with severe, intractable and crazy-making pain, I know you will understand.

I close with the above, and saying to all "may God's blessings, and the peace of Christ "which surpasses comprehension" be with you, upon you.

dougp

ps- I don't do any damn smilies!! Except low key cornbelt style :-)

Thank you
 

Thank you Dougp for you input. Its good to hear someone who has the SCS for so long. Ive mine just 3 months now and like that I too have some relief. Your information is very good. I have a great Rep too who seems to 'get me' which is great. So plenty of tweaking sessions.

Its interesting that you should say to give yourself at least a year to heal. I suppose we wouldnt generally think that way. Especially if you get relief and feel you are getting 'back to yourself' within weeks or months.
Its a matter of taking it handy and slowly.

Jackie :)

I'm actually wondering .. my doctor said the stim would do nothing for my back pain only the leg pain? Yet some of you guys seems to be getting stimulation in the lower back too?

Yep
 

I have a program that does cover my lower back and legs.
However, even tho the electrodes can be programmed to cover the lower back area, doesn't necessarily mean it will alleviate the pain in lower back.
Depending on the source of the lower back pain (ie: disc degeneration vs. muscle pain)....
I find the stimulation to be quite soothing for muscle pain in that area, however, since I have degeneration issues going on in my lumbar spine, the stimulator doesn't really cover the type of pain that this generates since it is more of a 'bone pain' thing.
Sometimes the stimulation in the lower back actually irritates the pain.
It just kinda depends on what 'mood' my back is in on any given day :rolleyes:

Hi Saffy

Yes some do and some dont. I dont get the relief I thought I would. I have Failed Back Syndrome, so after 5 operations nothing worked so the SCS was mentioned. But I also have burning, stabbing, tingling pains in my legs. So when I had the SCS implanted I said to my Dr that in order for me to get the pain relief in my back I have to turn the stim up really high and this sometimes is worse than the pain itself. He said to me that it 'generally' is very good with helping with the neuropathic pain in the legs but not always successful with the back:mad: So I was a bit disappointed. But having said that I do get great relief with my legs especially when Im lying down or sitting down. Unfortunately when Im walking I dont get as much relief...but that should be rectified Im sure in time once I have the reprogramming done and the actual leads are scarred in. Some say that could take up to a year for the scarring in. So I suppose its a waiting game and everyone is so different too. We all experience pain in different ways and have different feelings. So what works for some might not work for others and so on.

But its good to get as much information as you can and be educated about the whole process :)

Jackie :)

Me 'n Jackie are on the same page ....
 

LOL, we posted at exactly the same time Jackie - ha! :)

Like you said, the stimulator does a FANTASTIC job of covering the horrible burning neuropathic pain in the legs..... but the back issues are a whole different thing.
I'm so sorry you can't get more relief in your back where you really need it Jackie.....:(
I find that swimming in our local therapy pool at our Health Improvement Center REALLY helps! It's non-weight bearing and a great way to exercise the muscles in the legs........if I walk alot, it seems to put too much demand on my legs.
Do you like to swim? It's not for everyone, but to me it's wonderful.....especially if the water is nice and warm......
And YES I break the 'rules' :rolleyes: and leave my SCS 'ON' while swimming and treading water........I mean REALLY. Why be in pain when getting exercise.....!

I love swimming .. but at the moment it's the getting dressed whilst still damp that is the impossibility.

We are so in sync Rae :)
 

Oh my goodness Rae that was so weird :D

Im not a 'water' person really but I have gone to swimming before this, last year some time. I actually paid up front for 10 swims so that I would MAKE myself go but I have 8 left!!!!! so that tells its own story. But you know what, Im going to try it again. At the moment the weather here is miserable. Its been raining since MONDAY so I havent been out as much walking. Although I do have a treadmill in the sun room ahem:rolleyes:which is rather redundant!!! But Im going to make an effort!!

I know what you mean about walking and the demand on your legs. I also get this awful heavy feeling in my lower back, like Im carrying a whole weight around my waist and this drags me down when Im walking. Hence I have to sit and rest for a while. This is a problem that at the moment the SCS doesnt address. But ......Im hopeful that someday it will ..........

As regards the rules:rolleyes:tsk tsk....:DIm sure the SCS police havent gotten to your area yet. Although I have a confession too.........ahem I use my stim while Im driving:eek:I know I know you can all pick yourselves up off the floor now....but like Rae said what is the point in having it if I cant use it while Im driving. Which can be a real pain for me. So Im hoping to change my car for an automatic REALLY soon;)

:hug:

Confessions of a ButtBuzz Rebel.....
 

Ok OK!! .......... :lookaround:........ me too ! :rolleyes:

So sue me! :eek:

I sure don't want to be a 'bad influence'........but I'm just bein truthful.
The 'rule books' actually DO state that we shouldn't drive with our SCS's on....for safety reasons. I guess technically the SCS 'could' surge and cause us to steer into the oncoming traffic.......yikes.
.....well in my defense.....I think I was more of a danger to society before i even HAD the SCS because of my unpredictable mood swings due to being in constant unrelenting PAIN http://dl5.glitter-graphics.net/pub/...cyx9mmvc9s.gif
http://dl5.glitter-graphics.net/pub/...wkxe7kohyk.gif

I think if you know how it feels when it surges and are used to it ... no problem.

Yes true. I will admit I don't drive that often but when info it generally isn't too high. :)

I also don't want to be a bad influence ;)

wellllll..... If confession is good fot the soul...:rolleyes::icon_redface: I too drive with my unit on. My doc is well aware of this just tells me "we don't recommend it", He was adament however, that I not drive a clutch for the first month or so due to potential for twisting
:hug:z

Ok so we all have 'rebel blood' in us ! :)
 

:p
I bet, in part, the Drs and Reps have an obligation to say this to us to 'cover their rears'......they don't want to be held liable for the SCS devices getting a bad rap if something unfortunate were to happen. It would make for some pretty ugly headlines. Which I can understand. So......'IF' something WERE to happen, they would just be able to say 'We told you so!'.....and the responsibility and blame would fall on us.

Mine usually is kept running at a pretty low level, which in most cases I don't even realize it is ON! Which is good! This means it is doing what it SHOULD be doing....and I don't have to take the higher doses of pain meds, in which case, THAT would have put me at more of a driving risk if you ask me!! .....'driving under the influence' ?? :rolleyes:

Yes Rae I do imagine it's part of the 'speak' which has to be said for the unit. My doctor and rep also said I 'shouldn't' but...........;)

Well as Pooh said she was told not to use the clutch now thats my biggest problem changing gear. BUT. That's all about to end because yesterday I went and bought myself a beautiful red Toyota Rav4 jeep which is automatic!!!!YAY!!! So really looking forward to getting out more. I probably will stil keep my stim on while driving. It does the job for me ;)

Ooh Jackie .. that sounds ideal. I have a little old micra, manual and with no power steering, so each drive is a killer. Can't afford another car though so it's this or nothing.

I find reversing really hard as any kind of twisting anhow, gives me pain . . turning the wheel just does me in for the next couple of days; same as the clutch .. but I', still so glad I can do SOME driving.

Well Saffy its great to have that bit of freedom. I cant reverse either, well I mean I cant twist:D...I use the mirrors all the time. BUt like that I dont drive that often.....my other car was 4 years old and only had 8k miles on it:eek:so a young 'un still:D

I'm wondering if I will ever be able to ride a scooter? I can .. hahah .. I don't mean that perhaps the stim is going to make me able to do things I couldn' previously .. as if this car doesn't pass it's MOT this year, I'm afraid I will be scrapping it if it's going to be too costly to fix.